LP Nerve Damage
AnonymousDecember 20, 2006 at 12:46 am
Hi all, I have been off the forums for a while. I am only five months post GBS and got the cold which took me off my feet for a few weeks. I am now starting to feel better again finally. Anyways, just wondering if anyone has any type of permanent nerve damage from their LPs? I had three of them in one week plus a blood patch. My first 2 LPs and blood patch were done at L3-4, my third LP was don at L2-3.
In addition to the bad all around nerve pain that many of us experience, I have had this litterally crippling pain in my lower back that runs down through my hip and into my quad. I really noticed this pain when I finally got my neurontin dosage high enough to take the edge of the pain in the rest of my body. The pain in this area is so bad it brings me to tears and I find it really strange because with GBS I have noticed most pain has been on the back side of my body (hamstrings not quads) and its just the right side quad that hurts beyond the pain I have in the rest of my body.
My thought anyways was that maybe when I got one of the LPs a nerve was hit and did some damage which is now causing the quad pain. I was recently at my GP doctor for a routine physical and he said he thought I was just getting a lot of spasms which was causing the pain. I looked it up online for pain in that area and came across a few sites that talk nerve root damage in L1-3 would cause pain to the quadricep muscles and I also see that L2-3 would cause additional weakness in the hip flexors and ab/ad-ductors. I know my hip flexors and ab/ad-ductors are really doing horribly but that could jsut be the GBS too.
Anyways, before anyone says that I should go see a doctor (I am guessing my neuro would be the one to go back to for this) just wondering if anyone else has had this kind of pain or if anyone else has suffered spinal or nerve root damage from their LP. If so is it permanent, heal on its own, or something else to be done? I am just not sure how a doc would diagnose with all the other pains, weakness, numbness, etc that I still have. I can say that when touching my back in the L3 range I get excruciating pain that will make me bold upright and let out a little scream, leading to that pain down through my quadricep.
Thanks for any help you can offer.
EDIT: Just to clarify… my LPs were all done back in the beginning of July of this year so it has been a while. The pain may have been there all along but has become very prominent in the last couple months since my neurotin dosage finally got high enough to take the edge off the rest of the pain.
AnonymousDecember 20, 2006 at 1:01 am
well first let me say i am so sorry you have been sick, i know how even a cold can feel like a brick wall.
i recently had my 2nd lp, by a different neuro. i wasn’t pleased at all. i lost count at how many times he had to go back and numb again. the pain he was causing was shooting down my left leg right out of my foot (well felt like it anyway). recovery was about 4 days for the pain to go away. i still feel pain only when i move a certain way. though my pain doesn’t sound anywhere near your level of pain. i am sorry. i hope you feel better soon.
AnonymousDecember 20, 2006 at 9:43 am
I know exactly what you are talking about. I had two LP’s with multiple holes and a blood patch, back in July. I didnt notice anything for about a week, and then the pain hit. Everytime I would move, touch my lower back, etc., I would get this sharp pain starting in my lower back, which would then shoot down my hips, through my buttocks, and down through my quads … it was crippling. Everytime I tried to stand up, it would require a good 15 seconds of just bracing for the pain to go through my legs and me to garner the ability / confidence to even try to move any further.
I went to see a physiatrist (my wife is a physiatrist, so I went to see her partner, since my wife could get me in immediately). He tried a number of drugs (Gabapentin, amytriptiline, oxycodone, etc.), but nothing helped that intense, shocking pain. It stayed with me for about four weeks, and then slowly started to dissipate. I still feel it occasionally, but not nearly as intense or nearly as often.
In my mind, I have attached the pain to the rebuilding of nerves, rebuilding of flexibility in limbs, LP damage to nerves, and the healing process.
Hang in there … it does get better and becomes manageable … but all in its own time.
Email me if I can assist with more info, as I have become so busy this holiday season (or for us financial people, budgeting season), that I dont often get to check the boards.
AnonymousDecember 20, 2006 at 2:42 pm
I had an LP in 91 with no probs then this July my old neuro and a student neuro took 8-12 stabs at an LP during which they scraped my vertebrae and a nerve or two sending pain and weirdness into my right hip and quad. Since then I’ve had 2-3 episodes where it feels like a bee is stinging me or an insect is biting me in that same spot but nothing else.
I hope it is just a temporary thing for you.
AnonymousDecember 26, 2006 at 2:21 pm
[QUOTE=Carolyn ]Doby48 Why did they give you 3 LP’s in a week? And what is a blood patch?
I had GBS twice. When I had it 20 years ago, my excellent doctor (whom Suzanne Sommers interviews for her book) diagnosed the GBS in his office. A neurologist wanted to do an LP. When I asked him WHY, he said because he could do it in his office and it wouldn’t hurt! I asked him why he wanted to do something Invasive when I already had 98 % of the symptoms. It IS a syndrome. HIs reply was, “What are you – a nurse????” No, just an informed patient. This time in September 2006 when I got GBS, I refused getting an LP. After reading your post, I am glad I did. I know what I have. I did not need an LP to confirm it. I am getting stronger and have done it wholistically. Hope to be walking within the month. Everyone should read the book NO LAUGHING MANNER by Joseph Heller – he wrote about his GBS experience. Luckily I read it when I was in recovery – not before. Ignorance is bliss!
First let me start by explaining that a blood patch is what they do when you get a spinal tap headache. They take blood from you and then inject it into the hole created from the LP. Often times people dont get the headaches because their own body fluid will clot in the hole on its own but if that doesnt happen they need to inject blood in there to do the clotting and getting rid of the headaches.
As for what I had 3 LPs in a week it was because when I went into the ER the neuro that saw me said his initial thought was one of four things. The MRIs that I initially received and some blood work were able to rule out a couple of things. The LP is useful in telling if it is GBS or Menengitis by testing for the protein levels in the spinal fluid. I have read people that had been diagnosed with GBS only to have not even gone through enough testing to be able to say that is what it was, only to turn out that it was not GBS after all. There are several things that can present GBS like symptoms such as arsenic and various high metals in your blood stream as well as spinal or brain stem injury, menengitis or viral menengitis among many other things like tumors.
I have absolutely ZERO regrets in my decision to get the LP because GBS is not something that can be diagnosed without all the correct tools and it is also something that there is not a specific test for and requires a process of eliminitation. There are other things that present similar symptoms and with avoidance of them such as the higher metals the symtoms can go away on their own.
I had the first LP the day I was admitted to the hospital to test for menengitis or high protein levels in the spine which would support the theory of GBS. The first LP cam back negative for menengitis and also the protein levels were normal. The doc was running out of ideas because he thought it would be one of those things and my reflexes were normal. So the following morning he checked my reflexes again and they were gone. He wanted to confirm with another LP the day after that (2 days after being admitted) to see if the protein levels were up. I agreed because I wanted to be certain of the diagnosis and if my doc wanted it, well I trusted him completely and he is the one who went to med school, not me. So I agreed to the second LP which came back with normal protein levels. The day that I lost my reflexes they started me on an IVIG treatment and the doc said he wasnt going to put me through another LP and just hope that the IVIG worked…. well it didnt and my paralysis had spread up into my face at that point. I was transfered to the Mayo Clinic and they then wanted to do another LP since it can take up to a week for the protein levels to get high. When they had done the LP my protein levels were extremely high helping along the diagnosis of GBS. They continued to run blood tests, EMG, NCV ultrasounds, etc. and started me on PLEX (PLasma EXchange) for a couple of weeks when I finally started to turn around.
Anyways, the first LP on Monday evening gave me the spinal tap headache but they wouldnt do a blood patch until 24 hrs after the LP. Since the first LP came back as normal proteins I had another LP scheduled for Wednesday morning that they did in the same spot (this time in radiology to ensure the same hole was used) and of course the headaches continued but the LP still showed normal proteins. Then on Thursday morning I got the blood patch that stopped the headaches. On the following Monday afternoon is when I got the 3rd LP which showed very high proteins. My first two LPs were done L3-4 but since I had a blood patch done they had to go higher in the spine for the third LP to make sure they didnt get blood when trying to get spinal fluid so they did L2-3 for the third one.
Even if I do have any type of nerve damage. I have no regrets on my decision of getting all the spinal taps because I would rather have gone through that and been comfortable with the diagnosis then to not allow the docs the info that would help provide direction with valuable information. Not everyone will agree with me but if I had to go through it again, I would allow them to repeat all three LPs if necessary.
AnonymousDecember 26, 2006 at 7:37 pm
thank you doby for finding the post from carolyn, i had a post after her’s that had a few questions that must had gotten lost as well. i agree with you on all the lp’s and extensive testing that we go through for the diagnosis. of course no one likes to go through all these but it gives us what we need and rules out so many other things we might have. i know i have complained on this site about my testings but i am starting my ivig treatment in a couple days, that too i don’t look forward to but a part of me is excited to be doing something that might help me! i hope your pain from you lp get’s better, i wish you luck.:D
AnonymousDecember 26, 2006 at 8:36 pm
This has to be the craziest disorder! There are so many ways you can get it and so many symptoms. I am trying to figure out what we all have in common. There has to be a common thread that the doctors have missed. Why does the IVIG work for some and not others – for example.
I appreciate your taking the time to type so much. Don’t your fingers tingle, hurt or are numb?
The late Malcolm FOrbes once said: Anyone who thinks money is important either hasn’t been sick..or is.
AnonymousDecember 27, 2006 at 12:55 pm
My fingers dont hurt, but they are numb and tingle. I have been out of the hospital for 4 months now and have been typing for about 3 months. So, its just something you get used to. My fingers dont always cooperate and sometimes they just do their own thing, it just takes a little longer to type is all. At first it felt like my finger were big round sausages and couldnt hit a key and I had no idea what they were trying to do… but with daily practice it is getting easier despite the numbness and tingling.
The weird thing for me with my hands is that the tingling gets worse when i touch something cold. So when I get a soda, the can makes my hands more tingly. Or when I go anywhere and touch the handrims on my wheelchair, even though it is warm in my truck, by the time I get my wheelchair out the handrims are cold (its surprising how fast they get cold) and as soon as I touch them my hand get excessively tingly thats how I know its cold.
AnonymousDecember 28, 2006 at 12:12 am
This is just a thought……GBS patients tend to think that everything going on with there body is directly caused by the syndrome. Sometimes you need to think outside the box and go in a different direction.
Last year about this time I started having lower back pain (around my LP sites) the pain increased rapidly and after 2 days I couldn’t move my legs. Of course, the first thing I thought of was I was having yet another GBS attack. I went to the doctors and they sent me to PT. The PT discovered that my hips and pelvis were out of alignment causing nerves to be pinched in my back and my legs were literally not getting a signal to function. After getting everything realigned and strengthening the muscles to keep them that way, the pain has been gone.
The point of this story is……It may not be what seems obvious. I would consider different ideas as to what could be causing the pain.
AnonymousDecember 28, 2006 at 1:39 pm
Yes I actually have thought of other ideas before posting here. I had been to my GP doctor and he had no ideas and said he thought it was muscle spasms which is what my theory was as well since I wear a leg brace at night to keep my leg straight and that seemed to have resolved the issue. I just thought it weird that it only happened to the one leg but he still beleived it was muscle spasms. I still go to PT 3x a week and my therapist and her assistant didnt have any ideas because with me everything is strange, like how I can straigten my legs all the way but I cant bend them very well. I told them that I thought that in my sleep I was bending my legs up into the fetal position and that caused the pain in my leg and back and they said it was possible, or that I got some back pain at night and it was a knee jerk reaction causing me to bend the leg up. Bottom line is that everyone seems to think it was some sort of spasm but I havent talked to my neuro about it yet. Was just curiuos if anyone else has had this problem or not.
On this same note, I get terrible muscle spasms but I havent really read anything on this here. Anyone else get muscle spasms? Anyone on medication for it? I was recently prescribed some that helps a little and also has helped with the pain in my leg so that could be what it was. But that medication is also perscribed for sciatic pain as well so…? My GP is the one who perscribed the anti-spasm and its just temporary and he basically wanted me to tough it out even though that pain in my leg brings me to tears.
I went to a store last night and got stuck going through some coats, it took me a good two minutes to get through and I had everything hitting against every part of my body trying to get my chair out of that tight spot. Anyways that triggered muscle spasms that night that would not quit. This an issue for anyone else and what do you take for them, anything?
AnonymousDecember 29, 2006 at 6:00 pm
Have the PT check the alignment of your pelvic bones. They should understand. Mine were out of place by more than 3 inches (up and down) and 1 1/2 inches (front to back). This caused severe muscle spasms and of course pain.
I have to regularly check the alignment of my pelvis and take tizanadine (a muscle relaxer) at night. Stretching my legs and back at night helps the muscles relax, this helps relieve the pain and helps me sleep.
Stress and stressful situations can cause my back to stiffen and then the cascading effect…….I take xanax for anxiety and extreme stress, this also helps with muscles relax. Hot baths also have a soothing effect.
I have come to realize that this will never ‘go away’, I just have to be as preventative as possible and treat the symptoms as soon as they appear.
AnonymousDecember 29, 2006 at 7:47 pm
Doby, Mason gets muscle spasms. He will wakeup screaming. I tried massaging, the touch just made it worse. Is spasms and cramping the same. It is so hard for him to explain his pain.
I also learned to keep him hydrated. I almost wish they would give him fluids before and after his IVIG treatments. I have noticed when we were in the hospital having the IVIG and fluids he did so much better.
You must be logged in to reply to this topic.